Here's a quote from Mr King: In more than 50 years of reporting, I've never experienced so many people so misunderstood and abandoned by society and many doctors. I've worked on three continents and reported from around the world, but never have I had a response like the one I've had from writing about M.E./CFS.

In the article, Llewellyn has written one of the best short descriptions of ME that I've come across:

"For most patients, CFS is a one-way ticket to hell. The affliction is acute and mostly incurable. Horrifically, it takes away even life's littlest pleasures.

According to many interviews and hundreds of e-mails I have received since first covering the disease, sufferers are hit first with symptoms of what seems to be flu. Sometimes there is a short, deceptive remission -- sometimes two or three. Then the pattern emerges of collapse after every exertion, especially exercise. Finally, full onset occurs: There are no more normal days, only different degrees of weakness, pain and other symptoms. Doctors term the disease relapsing and remitting. That means you might have weeks, months or years of slightly better days, and then stretches -- often years, sometimes decades -- of almost total helplessness. It is goodbye to the life you have known; goodbye to work, to hobbies, to lovers and spouses, to everything short of hope."

At some point Llewellyn King says something interesting. He says something like "ME/CFS people have no lobby". I think that's our biggest problem and the difference between us and other groups. It's a problem that we are not well enough to do much, but we must find a way somehow to improve in this point.

It's in the first minute of Episode 1 Part 2. I think it's worth listening to.

At some point Llewelly King says something interesting. He says something like "ME/CFS people have no lobby". I think that's our biggest problem and the difference between us and other groups. It's a problem that we are not well enough to do much, but we must find a way somehow to improve in this point.

It's in the first minute of Episode 1 Part 2. I think it's worth listening to.

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Yes, I thought that was very striking and it's so nice to see a non-PWC like Mr King saying this (or did he ask why there is no lobby and Dr Enlander answered?). Anyway, whoever it was (!) said that we have no lobby because we are so debilitated by our illness that we are unable to work, quickly run through our savings and are in no position financially to donate to ME charities that would lobby for us.

I think he could also have added that it is very common for people's relationships to be destroyed by the illness and so many of us don't have a spouse or partner who would be out fundraising in support of our charities in the same way that, for example, many cancer sufferers do.

I hope you all on this thread are voting daily in the Vivint contest, by the way! Free research money! Just thought I'd mention it in case my signature isn't loud enough...

Yes, but even if that's a sensitive issue, i think we should think about wheter it's really smart to spend a lot of money on treatment attempts that don't help much or might even harm you and then have nothing left for lobbying, advocacy or research. I think one should prioritize the second option, if possible. Unless the result of your treamtents is satisfactory (gives you the health you want to have) or you need the treatments to not deteriorate further. But even then it would be nice if you could put a little bit aside and donate it, to help the others. It's not impossible to donate, it's difficult, but possible. We need the right spirit in the community so that people realize their small donation can make all the difference if a majority participates.
I understand what you and Dr. Enlander say, but now that we have identified the problem (not that we didn't know it before) we can't stop, we have to find a way to overcome it or navigate around it. It's difficult, but we must do it somehow. We desperately need a stronger lobby.

Yes, but even if that's a sensitive issue, i think we should think about wheter it's really smart to spend a lot of money on treatment attempts that don't help much or might even harm you and then have nothing left for lobbying, advocacy or research. I think one should prioritize the second option, if possible. Unless the result of your treamtents is satisfactory (gives you the health you want to have) or you need the treatments to not deteriorate further. But even then it would be nice if you could put a little bit aside and donate it, to help the others. It's not impossible to donate, it's difficult, but possible. We need the right spirit in the community so that people realize their small donation can make all the difference if a majority participates.
I understand what you and Dr. Enlander say, but now that we have identified the problem (not that we didn't know it before) we can't stop, we have to find a way to overcome it or navigate around it. It's difficult, but we must do it somehow. We desperately need a stronger lobby.

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Hi eric - I don't think I expressed myself very clearly (or Dr E's view, maybe). I don't think he was saying that people were running through their savings by spending them on treatments, necessarily - I took him to mean that they maybe lost their jobs or had to work reduced hours and couldn't keep up with their bills and were basically on benefits and on the breadline.

I agree that it's good to donate if at all possible - no argument from me there!

I think there was a guy somewhere on the net a while ago saying that people should donate 1% at least of what they spent on treatments a year. That seemed very doable! I used to follow the "Just Four Quid" ME fundraising blog that ran for a year and that suggested ways of saving money so you could donate part of your savings to ME research. I still make the effort to make savings that I might not otherwise and use what I save to donate to research.

I misunderstood him there, even before your post . I like the idea of showing other people with ME/CFS how to save money. All sort of useful information should be available to anyone, i think that's very important. No matter what it's about, doctors, campaigns, contests, news, science, politics. Many people probably have little idea about things and that's bad for them and also we lose them for our cause.

I don't know, but i think we should try to make it available in as many places as possible. I'm still curious if it's aired on TV as well or if it's "only" videos.

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I get the impression that this is a personal project of Llewellyn King's, and that it won't be broadcast on TV.
That's just a guess though.
I can't find the official website, to find out any information, if there is one.

Hi, in the second video there is talk of the Methylation cycle issues, due to a conversation with Rich.

I get the impression this is intended as a regular video show. That could be interesting. What will we see in episode 2?

Bye
Alex

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Hi, Alex and the group.

I think it's a very positive development that a guy with the background and connections of Llewellyn King is publicizing ME/CFS. It was nice to see Dr. Enlander acknowledging our interaction again, too. I think that methylation treatment has sort of turned the corner. There are now several variants of methylation-type treatment in use by various people. At this point, there are quite a few physicians "preaching the gospel" of methylation treatment in ME/CFS as well as related disorders (autism and "chronic" Lyme disease), and I'm able to just sit back and watch! Physicians tend to listen to other physicians, so one who has good experience with a treatment can have a big multiplier effect. I still want to encourage people to talk to their physicians about this treatment, though, because there is a long way to go before very many of the mainstream physicians will actually be using this type of treatment, and I think that many more people could be helped by it. Perhaps PamLab will make inroads with their prescription "medical foods" (Deplin, Cerefolin and Metanx) which impact the methylation cycle. Mainstream physicians tend to be more comfortable with things they can prescribe, I think. I note that Dr. Deckoff-Jones has posted about her use of Deplin on her blog.

It's nice to see something happening that I think has the potential to make a significant dent in the misery of ME/CFS.

I agree. Mr. King said early on that he wasn't a health writer and didn't want to be, but was amazed at how many new friends he had with ME/CFS after writing about it. To have him just take up this cause and nominate himself an advocate, apparently for humanitarian reasons, is extremely encouraging.

It's slightly disappointing that this is something done not on his TV show (is his network against more than an occasional segment?) but on youtube with a non-professional photographer, although it's possible to actually get more exposure this way. And it's amazing that he would apparently do this in his personal time.

Perhaps PamLab will make inroads with their prescription "medical foods" (Deplin, Cerefolin and Metanx) which impact the methylation cycle. Mainstream physicians tend to be more comfortable with things they can prescribe, I think. I note that Dr. Deckoff-Jones has posted about her use of Deplin on her blog.

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Hi Rich - I hadn't heard of any of these things until I read Dr D-J's blog this morning. After a minor google I found some manufacturer's info on Deplin for example, which says it's for depression so they don't seem to be marketing it in methylation terms.

I hadn't heard of prescription medical foods before. I wonder if it deserves its own thread? I wonder if other PWC are trying them.

Yes, I was pleased to hear that too. One of my frustrations is that there doesn't seem to be a very joined-up approach to treatment going on and given that this is a multi-system disease, I'd like to see consideration of every treatment that seems to work with more analysis of which are likely to be just treating symptoms and which getting closer to treating the cause(s).

This thread is a nice example against the image of the angry ME/CFS crowd some people somtimes want to portray.

Just look at the positive feedback Rich, Llewellyn King and Dr. Enlander are getting. We are very appreciative of anyone who is actually trying to help us.

Maybe sometimes we are a bit too angry in comments sections, i don't know, we are right, but we might be sending the wrong message to people who have no idea about our situation, but certainly we don't just blindly attack anyone, much to the contrary. The same people also then sometimes criticize us for making a "cult" around the WPI...

Here's a quote from Mr King: In more than 50 years of reporting, I've never experienced so many people so misunderstood and abandoned by society and many doctors. I've worked on three continents and reported from around the world, but never have I had a response like the one I've had from writing about M.E./CFS.